………………………….Can make for a pretty complicated relationship.

Actually, I just saw the comedy Friends With Benefits last night and wanted to share because the movie touches on Alzheimer’s disease…………. Now, most times, I take issue with how news, movies and TV shows portray dementia……………… they typically avoid the grotesque, that is, the disease is wrapped up in a nice pretty bow at the end of the program…… like it’s actually a problem that can be solved.

For me, that’s just plain irritating.

In Friends With Benefits, Justin Timberlake’s father, played by Richard Jenkins, has Alzheimer’s disease and he actually has a challenging behavior: he takes off his pants in public. Part of the storyline (besides the obvious, beneficial, one) involves Dylan (JT) coming to terms with his dad’s diagnosis and behavior……………. Yes, the father has more lucid moments than not, and in those lucid moments, he’s incredibly wise, kind-hearted and ultimately helps his son make the right choice when it comes to love; however, what I liked was that the film (albeit briefly) addressed the toll on young adult children………… Dylan lives in New York, his father lives with his daughter in Los Angeles — there’s an inner conflict; Dylan’s feelings of embarrassment, especially when out in public; Dylan’s heartache at losing another parent (his mother left the family 10 years earlier); Dylan accepting and coming to terms with that which he cannot fix………….. he finally steps into his father’s world and walks around in his shoes.

The movie is out on Netflix and on DVD… it’s a fun flick and it made me laugh, so check it out if you can.

She knows me……………… Hanging with mom in bed……… Like we used to do………….it’s 2012…. Another day. Another moment lost. I call it Walking Grief…………

I do not look like my mother.

But ask anyone else and they would disagree with me. Oh my God! You look exactly like her, they say…. I’ve tried, but I have never seen my mother in the mirror……………….. And I have many mirrors. Truthfully, I’ve always fancied myself my father’s daughter……………… both in appearance and overall disposition. However, in recent years, I’ve come to the conclusion that as far as disposition is concerned, I am neither parent.

I march to the beat of my own drummer………….. my temper is neither his nor his, maybe a blend of the two…………….. My coping mechanisms are much different. My approach to problems, vastly different. My view of the world…………….. different.

My sense of humor is neither his nor his……………. In fact, as sad is this may sound, I don’t recall either parent ever making me laugh out loud. I don’t remember much joking going on at all in our house. That might explain why I overcompensate in the humor department………………. I like to laugh, and I have a pretty loud laugh.

Just ask anyone who knows me.

Physically, I always thought I was my father. Big lips, brown hair……………….. wide feet.

It actually bothers me when people remind me that I look like my mom. I have no idea why, I almost find it irksome………….. I don’t look like her, I think to myself when people make the comparison…………… I can’t really explain where this contempt stems from, except to say that I’ve sort of always viewed my mother as weak. Fragile. Never one to take risks or follow her heart. Never one to pursue her dreams. She is dying now and I know that she never accomplished one of her goals……………………… She would always say, “I should have gotten my degree, so I could teach Spanish…” or “If I had started working on my degree when we lived in Iowa, I’d be done with it by now…” My mom had earned her college degree……………….. in Ecuador. She needed to take more classes in order to teach here in the U.S. She never realized that dream. I suppose there was always something…………………. isn’t that how life operates? There’s always something to keep you from doing what you want to do……………………. Instead of going to college, she taught privately at night to school teachers here in Phoenix who needed to learn Spanish and worked as a school secretary. I don’t think she was especially happy about her lot — she always seemed anxious or nervous; she was a hypochondriac. There was always something when it came to her health…………. maybe she knew all along that something was wrong……………….. nobody would have figured out, not until she was too far along to do anything (if anything were an option) about it.

I don’t know what my mother was like before she met my dad……………………. I have a photograph of her from when she lived in Louisiana (was she this world traveller? Is that where my itch to see the world came from?) and on the back she had written a note professing her love………………….. to another man. After living in Louisiana, she moved to New York City (like mother, like daughter I suppose) where she worked as a secretary. I have no idea why she went to Gotham………… all I know is that she lived in Corona………… a neighborhood in Queens that is still popular with the Ecuadorians. Someone in Corona probably knew my mother……………. what she was like, what she aspired to do and be………………….. my mother’s past is shrouded in mystery. I don’t even think my own dad knows that much about it……………………

I suppose it is because I don’t know her………… I don’t see the resemblance. We’ve always been different she and I…………… I often wondered if she thought she had done something wrong in raising me………………… why is she like that? 

It doesn’t matter because it doesn’t anymore.

I met Robin a several months ago at an Alzheimer’s advocacy social — funny thing about this disease… you sort of feel protective of the people you meet who are walking down this dark and lonely path… Robin’s mom suffers from Alzheimer’s disease and up until recently, her dad was the primary caregiver.

I think what drew me to her was the circumstances behind her story…. her folks live out east and she goes back and forth when she can to support her family (been there, done that, totally sucks)… When she’s not coping with the loss of her mother, she’s a wife, a working girl, a sister, and now, soon-to-be mom.

For Robin, the joy of her pregnancy has, in some ways, been eclipsed by her mother’s disease… you see, Robin won’t have what many women enjoy — the support and guidance from her own mom… Initially, she was pretty pissed off about that and rightly so… she felt (and perhaps still feels) cheated.

I recall her posting her feelings on a Facebook group page… she pretty much ran the gamete of emotion on that single post: anger, sadness, frustration, rage, heartache — my own heart ached for her.

This is one of the more grotesque facets of this disease that no one really talks about… yet another example of how the disease robs us… not just of our parent, but of those wonderfully precious moments that have yet to come… moments like pregnancy.

I asked Robin to share her experience… she hesitated at first, but after some thought, she decided to put fingers to keyboard and share her story.

Thank you Robin for doing this…. it takes guts girlfriend. I am in your debt.

I vividly remember a day in college when my mom and I were out shopping and we saw a mother a d daughter pushing a stroller. She told me how she couldn’t wait to be a grandmother. That was 1995. I remember her asking me when I was going to settle down and start a family — the reminder that I wasn’t getting any younger — every time I saw her, every visit. And then the diagnosis came in early 2006: Early Onset Alzheimer’s Disease.

It wasn’t as if we didn’t see it coming, the signs were there. But to see it on paper, shook me to the core.

Later that year I finally met Mr. Right. I remember after we were engaged, I was visiting my parents at Christmas and she told me it would be OK if I was “a little bit pregnant” when I got married. Not the way she raised me — at all.

It was the desperation for grandchildren shining through.

During ever visit she would ask me if I was pregnant — sometimes up to seven or eight times a day. Last Christmas was the worst, because just days before going to visit, we learned that while we were pregnant and there was an 80% chance that we would lose the baby.

I couldn’t tell her I was pregnant and I couldn’t get mad at her every time she asked me if I was, even though it killed me. It wasn’t her fault, yet she had no idea how much it hurt me. The thing is, even if I did tell her, she wouldn’t remember. Getting mad would have only made her feel bad, which would have made me feel worse, and she would have kept asking anyway.

When we lost the baby, I desperately wanted to talk to her about it. I knew she had a miscarriage before I was born. She would have understood.

We’re pregnant again and everything looks like it’s going well. Not only that, but my brother is also expecting. She will not only be a grandmother once, but twice by the end of the year.

Yet, what was supposed to be a happy time for our family has turned to worry. At this point, my mom has hit late stage Alzheimer’s. There came a point when my dad could no longer take care of her, and she had to be placed in a home.

At times, she no longer knows who we are.

She will never really know her grandchildren.

I miss her terribly. I wish I could ask her questions. I wish she could be there for the birth of her grandchildren. I wish I could go shopping with her, just like that mother and daughter we saw when I was in college. She waited so long for this, she wanted to be a grandmother so badly, and she would have been a great one. I want to throw a tantrum and scream at the top of my lungs, IT’S NOT FAIR! She was always great with kids. I wish my kid would have had the opportunity to know her — the her I grew up with.

I’m angry. I’m hurt. I hate this disease with every fiber of my being. It’s robbed me of my mom. It’s robbed my mom of being a grandmother. It’s robbed my child from ever knowing his or her grandma.

 

>>Flikr pick by Evan Hunter

I don’t tend to get pissed off very often… you know, the kind of pissed-off-rage that suddenly comes over you like a blanket, only to have this urge to hit something (or someone). That feeling or moment came over me last Sunday………………………….

I took my mom to church and although I was prepared — she wore a diaper — we still had an accident. A messy one. She had made it to the toilet, wiped, pulled up her diaper, walked out of the stall……………. and then this this look came over her face…… that look that I’m sure most young kids give when they just realized they pooped their pants — so close, yet so far.

Mom sat back down and when she pulled down her diapers there was a little mess… OK, I’m OK… my “diaper” bag was in our pew so no spare diaper… let’s just clean it up and hope for the best………………… she had a better idea, she put her finger in it. Things spiraled from there in terms of poop-gate. I eventually got her mostly cleaned up….. I think some poop splattered on my foot and a little got stuck in the nail of my thumb. I will say that it took a lot of self control to not vomit……………….. vomiting crossed my mind. I just couldn’t wipe and puke. OK. Wipe, wipe, wipe and let’s roll! Things were cool. We were cool. She was cool. I was cool. We survived mass………………….. amazing.

And I was fine. A little frazzled, but cool………………………………

I texted my boyfriend at some point to tell him about what had happened. He replied with an upside down emoticon……….. I mean, truly, what do you say?

“sucks to b u. LOL…”

Not long after the emoticon text, he texted me to tell me that he had just had lunch with a friend at Paradise and they were hanging out by the pool.

I snapped on the inside. I was pissed. I was angry. I was mad because he was doing what I would like to do……………… have lunch with a friend and hang out. As fast as it came over me, it was gone……. I would never ask or expect my boyfriend to give up his Sundays so he could go to church with us… he does enough for my family……… nor would I ever ask him to stop telling me about his day………… like any good boyfriend, he was just giving me an update……………….. but there was this flash, this flash of anger……….. jealousy. I suppose we all feel that from time to time…….. envy ………………. because we aren’t like other people; we have responsibilities and obligations…………. you show up because that’s just what you do.

Taking your problems out on those closest to you is not uncommon….. some days, life just gets under your skin…….. I am at a point now where this disease is like a phantom limb…. I know the limb is gone, but sometimes I can feel it….. I know the disease is there, it doesn’t always affect me, but every now and then, it just pisses me off…………… that, and it’s too hot out……………… and the person who is at the receiving end of my crankiness is Jon. I know it’s not fair……………… I try to sequester myself when I’m in a funk, but sometimes, my funks can last for a couple of days………………… I just feel sorry for myself. I feel angry. Resentful, bitter and filled with contempt — especially towards those in my own family who I feel judge me and my dad………………… or judge the name of this blog.

Because that’s the real problem……………………… [insert sarcasm].

Jon is kind. He is compassionate and patient. He doesn’t get angry. He doesn’t lash out. He just waits for me to come out of the fog……………………………… to get over it.

Until the next time.

My latest funk has been a bit nasty………………………… just thinking about her, poop, life, its meaning, my purpose, my dad, his health, next steps with my mom….. do we put her in a home next year? When is the time right? What if we face a similar situation like last time? When will this end?

Overthinking is rarely good for the soul.

>>Flickr pic my one of my personal faves…. Meredith Farmer

My boyfriend Jon talks about meeting my mom… funny to read his story, because in some ways, it’s very different than mine, which you can check out below:

The week leading up to the big meet.

The meeting… postmortem.

Jon’s story……………………………………………………. thank you so much for doing this!

I first met Gaita in early 2010.  I don’t remember the exact date, but I’m pretty sure it was in March.  My new girlfriend invited me over to have dinner at her parents for the first time.  To me this was a mere formality—something you do when you date someone—something that didn’t bother me in the slightest.  Kathy on the other hand?  Well, let’s just say she was very anxious about this meeting, and not in a good way.  Unbeknownst to me, I was about to venture into a world that many had not been to before.  Unbeknownst to me, I was one of a few people who Kathy actually took over to meet her mom.  You see, Kathy was embarrassed.  But this kind of embarrassment-turned-anxiety was not at all what the average person in this situation goes through.  There weren’t those thoughts like, ‘Will my parents like him?’ or,  ‘Will he like my parents?’   Instead, it was more like, ‘Will she scream at him?’  ‘Will she spit on the floor in front of him?’  ‘Will he see this and run????’  Well, I’m happy to report that it’s been almost a year-and-a-half and I haven’t run. In fact, I’ve been over to dinner at her parent’s house many times since then; but, I digress…back to my first meeting with Gaita.

To tell you the truth, I didn’t know what to expect.  The only time I’ve met someone with something similar to what Kathy’s mom has was back in high school when I met a friend’s grandmother who suffered from Alzheimer’s disease.  I didn’t know much about it, but I remembered that she forgot things pretty much instantly.  So at the time, to me, dementia was something that just caused you to lose your memory.

Obviously, as we all know, dementia is a lot more than that.

When Kathy invited me to dinner, I didn’t think twice about it. This was my girlfriend inviting me to have dinner with her parents.  So her mom has dementia…don’t all families have something?  Maybe it was in the way I was raised.  All I know is that I never thought anything about it.  Obviously this was something that stressed Kathy out tremendously.  I remember the four of us (dad, Kathy, mom, me) standing on the back patio.  Kathy’s mom had walked up next to me.  In the blink of an eye, there was Kathy inserting herself between us, adding some ‘protective field’ or barrier she thought was necessary.  Turns out, there was no need.  Yes, her mom suffers from some behaviors, but who doesn’t?  So she spits on the floor (something I actually haven’t seen her do in some time now)… I pick my nose in private.  So she repeats herself since her vocabulary has diminished with the disease… I play by the five-second rule. My point is, we all have something. I remember telling Kathy when we left that it wasn’t the like she walked out of the back room naked or something.  And even if she did, it wouldn’t have mattered.

Despite her fears, dinner was really pleasant. Gaita greeted me in Spanish, of course (she lost her ability to speak English).  And when she realized I only spoke English, she told me in plain English, “I don’t speak English. I only speak Spanish from Ecuador.”  I always thought it was so funny how she told me this in English.  Now, she speaks almost no English at all. Once in a while, she’ll say, “Oh I see,” which really means she has no clue what you are talking about or what’s going on.

Besides Kathy trying to keep her mom at bay, the entire visit was really nice.  Gaita is one of the sweetest women I’ve met, despite her disease. I didn’t know what to expect, but I didn’t really expect anything if that makes sense.  I expected to have dinner at my girlfriend’s parent’s house where mom with dementia lived.  That’s all. No more. End of story.

Still, this first meeting took its toll on Kathy. Even STILL, it takes a toll on her. Every time we go over to see her mom, there is something in Kathy that is still ‘protecting’ me from her.  As silly as that sounds, that’s how I see it.  I also know that Kathy has come a long way when it comes to her mom and me, and she might actually be starting to believe that I accept her mom for who she is, as someone who has frontotemporal dementia. That’s the only mom I’ve even known and the only mom I ever will know.  I understand how hard this is on her and  I don’t want her to worry about me.

She has enough to worry about.

>>Flickr pick by 27147

It’s easy to lose sight of the “before” when the present is always is so incredibly, in-your-face-front-and-center present… that probably explains my own memory loss when it comes to my mom… for whatever reason, I can’t fully remember what she was like before she became sick, before the disease stole her away… my memories are mostly feelings… of course, occasionally, somethings pulls me back in time and I catch a glimpse of our mother/daughter dynamic… that’s always weird and painful because you also see how you were…

Last Friday, we were sitting at my dad’s dining table looking at old pictures… Jon was snapping photos of my incredibly awkward stage and uploading them to Facebook… we were laughing and listening to dad share stories… stories about my grandpa and how he was offered a 2nd Lieutenant position because he could speak Italian… I told my dad that after this last trip to Italy, I decided I was going to take Italian at the community college, I suggested he join me…

………………………………and then I remembered Independence Day… the movie.

I think it was 1996. ID4 was a big deal, I could hardly wait to see it. My dad wanted to see it too. My mother was never into “scary” movies; not 10 minutes into it, she stormed out of Saving Private Ryan—dad was pissed. This summer was different. My mom was going to Ecuador for a month or two. I don’t remember if I was going to meet up with her later (we traveled separately for two reasons: 1- she would stay longer than I would and 2- she stressed me out when we flew—turbulence for my mom meant the plane was going down). My cousin was getting married in Minnesota that August and I was in the wedding party; I was probably staying home, getting ready for the Minnesota trip and working at the local movie theatre.

I remember feeling happy that my mom was leaving, and that my dad and I would finally get to hang out—just the two of us. My mom and I never really had deep conversations from what I recall; I think maybe we were culturally divided to some extent… I was an American kid being raised by an Ecuadorian mother… our differences were stark. I couldn’t always relate to my mom, I’m sure she felt the same frustrations… how do I communicate with this foreign child of mine? My dad was different. My American father. More like me. But then again, my dad traveled a lot for work and he wasn’t always home… so maybe it was just having someone else to talk to… that, and I felt like I could talk to him on a different level… maybe deeper, or maybe it was as simple as wanting someone else to talk to

As an only child, I felt lonely a lot.

I guess I hadn’t settled into being OK with just me.

The morning of our movie date, my dad took my mother to the airport… that night we went out to eat and caught the movie. I remember telling him on the way home something about my mom… his response was something like, “she’s your mother…” I can’t remember what was said or what I said… I was 19. I think I just wanted my mom to get me, to understand me and that I was not like her in many ways.

I once had a therapist tell me that when it comes to mothering, there are different behaviors or something… there are mothers who are incredibly nurturing when the child is a baby or toddler; their ability to connect is deep; but when that child transitions into adulthood, something happens… a shift. A miscommunication. The mother doesn’t perhaps know how to mother an their adult child. I don’t really remember how she explained it, but that seemed to be our relationship… my mother was an incredibly warm and loving parent, very nurturing. She would do anything she could for me. Even when I was a teenager and in my early 20s, we would spend time together and go shopping—it was our thing, perhaps our way of communicating. But we never reached that “friendship…” stage… where you could talk and confide, share secrets, talk about life, it’s meaning, how to cope and deal with life, men, careers, life, family…. we were clearly mother and daughter. Very black and white. No crossing of lines… I don’t know, maybe that “friendship” or blurring of lines is what happens as you get older.

I wouldn’t know… I started losing my mom when I was 27 or 28.

Fast forward.

When I asked my dad to join me; it struck me as ironic that so long ago, I wished away my mother… and the god’s listened to me. They actually listened.

They took away my mother.

So there I was, 15 years later (almost one week away from the day), sitting at that dining table, looking at old photographs with a glass of wine, realizing what I had done.

I opened Pandora’s Box.

Flickr pic by Big Fat Rat

My mom turns 74 today.

She has no idea that today’s her birthday.

She doesn’t even know I’m coming over to ring in her big 7-4.

I bought her hot pink nail polish, a pair of earrings and Almond Joy.

Happy Birthday mommy.

Alas, my mother tongue is English, the blog is in English and according to Merriam-Webster, DEMENTED has two meanings:

1. mad, insane
2. suffering from or exhibiting cognitive dementia

My mother fits both definitions quite nicely. The assault on my use of the word was so incredibly hurtful. They attacked me, the blog and from my point of view, my role as her daughter. I felt like such a horrible person, a rancid daughter, clumsy, baroquely grotesque, wretched and positively cheap……………..I knew it was a strong word……. but the name of my blog was never meant to disparage my mom or her memory………. she is demented. She is sometimes mad. She does suffer from cognitive dementia.

I love my mom.

I miss my mom.

This morning I woke up wishing that I had started wearing a purse when I was younger—when she told me too. Silly, random pre-dawn, pre-caffeinated thought. She used to tell me that I should wear a purse. That a girl my age should wear purse. I hated purses then (love ‘em now), but I wish I just did what she wanted me to do. It would have made her happy.

I no longer have any relationship with these individuals—there’s no point. That and I’m stubborn but mostly I don’t think there is a reason to resume relations with people who just don’t get it. Who never will. I don’t know if I’m sad about that…… maybe more disappointed…………. but for me, family goes beyond blood lines. Natalie.

Cheryl.

Lindsay.

Petra.

And of course, my Jon.

New topic.

I talked to Sandra Gonzalez at the Alzheimer’s Associate Desert Southwest Chapter. My mom hates baths. Sandra was sharing some tips for making bath time a little easier…. Play soothing music. Prepare her bath before she gets near the bathroom (apparently the noise may be amplified for those suffering from dementia). My mom screams. She yells, PORQUE ME PONES? PORQUE ME PONES?

That’s dementia for, WHY ARE YOU DOING THIS TO ME? YOU KNOW I HATE WATER. PUT MY CLOTHES BACK ON. I SWEAR TO GOD IF YOU PUT ME IN THE WATER I’M GOING TO SCREAM. YOU’RE REALLY PISSING ME OFF.

We also talked about communication…………. communicating with my mom, understanding her and talking to her in her own language. My mom has less than a handful of phrases that she uses and repeats over and over….. I use the same phrases to talk to her.

Oddly, she understands me. No idea what she thinks I’m saying, but she responds….. in her own demented language. I am in her world. Every time I visit my mom, I step into her world, I engage her……….. I “allow” her to shop lift………. I listen to her. I paint her nails hot pink. I clip her finger and toe nails. I dress her sometimes—something I actually like to do……. granted she ended up with a pair of Converse One Stars, but she likes them and I own the same pair (I like it when we match…………… it’s my thing).

Tomorrow, March 25, is my mom’s birthday. She’ll be 73.

>>Flickr pic from Mariel B